Tubes Are Out!

I woke up early this morning next to 'Declan, eager to check his chest tubes to see how much fluids had drained during the night. My spirits were lifted when I saw only a minimal amount of fluid. Maybe this would be the day!  My spirits were dashed shortly thereafter. Declan's nurse came in for morning medication and vitals, and I asked if she had "pulled" his drainage during the night, or if it was just the small amount that I could see. "Twice," she said, "I pulled it twice." Uugghh.  Still too much fluid.

So we spend the day walking him and pulling him in the wagon "around the floor", to and from x-ray, and anywhere else we could. (Moving him around helps get the fluid out.) Then around 2 or so we heard the good news. We would be getting his chest tubes pulled later that afternoon. So around 3 or so, Declan was given morphine and we were taken to the "procedure" room.  So for about 5 or 10 minutes we listed to Declan become punch drunk. He would randomly start counting and mid-stream switch to the alphabet, then start pointing and talking to pictures on the ceiling. The nurses thought he was hilarious   You could definitely tell the tube pulling itself was painful, but was greatly subdued by the medication.

The difference was almost immediate. He was so happy - chatting and playing like our little boy of old. We were so happy to have out little guy back!  We wheeled him around the floor again and he saw a car he wanted to ride.  We first pushed him but he then took over and pushed himself with his feet. Tammy almost began to cry - it was so wonderful to see him move on his own.

Hopefully, this should mean just a few more days until he can be released!

Being Thankful

If there has been one lesson Tammy and I have learned with all of Declan's surgeries, it has been to be grateful for what you have. We have been reminded of this the past few days as we have gotten to know the parents of other heart defect children. Our current room is shared, and our previous "roomie" was a little boy that a kind family from Michigan had adopted from China. He has some heart issues similar to Declan, "plus some". In the months leading up to Declan's surgery, we would be nervous for oxygen sats in the high 70's - the young boy from China usually measured in the high 60's that was his "normal" saturation.   I am amazed and grateful that a young father and mother could find the courage to adopt a child with such a known set of problems. And last night Tammy met up with a couple of other heart "mothers" for dinner - one of which lost her daughter at age 8 or so and one mother whose stay here is not going very well for their child. We are frequently reminded how blessed we are with Declan's progression with this surgery.

We have had relatively little hiccups. He is still a bit grumpy, and we have to keep working on him to get him to flash his cute little smile. We know that his demeanor will improve once the drainage tubes from his chest are removed. (The drainage continues to decrease, but not enough to remove the tubes as of yet.)  No fever. His heart rate was a bit high today, but we think it was due to a loss of fluids. It currently is back into range, so hopefully it will stay there. He took a couple of little walks today. (Measured in steps - from the bed to the wagon - and back again). Declan also had the gamete of tests: blood drawn, xrays', etc. They continue to be pleased - just working on getting the drainage out of his chest so we can have our happy little camper back!

The "Right Here" Connundrum

"Right Here". This phrase became Declan's favorite requests after his Catheter - when he first woke up from anesthesia, he wanted us right next to him. Not just sitting next to his bed, but RIGHT NEXT TO HIM on his bed. We knew this request would resurface at some point after his surgery and it finally did Tuesday night. Tammy had the night shift and Declan kept requesting her to be "Right Here" (next to him - in what resembled a crib more so than a bed). Since Tammy is not 3 feet tall, she couldn't get in and it made for a long nigh! 

Thankfully yesterday, Declan was moved to a full size bed which allowed us to be"Right Here" next to him. That made for a much more pleasant night  I slept next to our little guy without much trouble. Frankly, I'd rather squish in next to him on that bed than sleep on the luxurious "fold a chair".next to his bed. 

With the "Right Here" problem solved,  Our current goals are as follows:

1. Get his drainage levels from his chest tubes down.

2. Make sure his lungs stay clear.

The biggest hurdle for most Fonan surgeries is the buildup (and release) of fluids around the outside of lungs/chest cavity. His drainage rates have decreased, but not at a nigh enough rate to remove the drain tubes from his chest. It is a catch 22  because he doesn't feel very good moving around with the tubes in but he needs to move around to help the drainage so the tubes can be removed. 

The other thing we are working on is making sure his lungs stay clear and don't develop fluid buildup inside the lungs. Again, a catch 22 because it hurts to cough but he needs to cough to prevent fluid buildup. 

Overall his progress is good. our biggest challenge is keeping him happy and in a good mood. He likes going on "outings" to the toy room to play, but of course he didn't like it today when we made him stand up on his own.  Today he really didn't start "chatting" until around 5 tonight, after his  Oxycodine took effect. We've told him everybody is rooting for him!

Amazing

A few days ago I was driving the girls on some shopping errands and we somehow entered into a discussion with Cambria on what qualifies something as "Amazing".  She gave some great examples of amazing things such as a blue sky, flowers, and songs and things perhaps not qualifying as amazing such as dirt and hair (at least Dad's). Well, I think Declan's progress thus far would also qualify as amazing.

Most of yesterday afternoon and into the evening Declan had a very slight fever and they don't like to remove the breathing tube if there is a fever. They don't like anything that could tax the body more than normal when it is forced to return to breathing on his own. The Doctors are very careful to avoid a collapsing lung and take every precaution to avoid it. He was on ice packs and the room was frigid.  They were going to shoot for around midnight or so to remove the breathing tube. And although Declan had this low-grade fever thought the afternoon/early evening it was amazing to watch it slowly decrease up to the time it was removed around 1AM. Declan reacted very well. His breathing was strong and looked great and was able to stay off the ventilator.

And although it was a long night to keep him happy, he reacted well. He couldn't have water, despite his cute throaty, "water?  water?  water?" requests. Around 4AM we resorted to Disney Jr, to occupy Declan, I was out of gas. The other great point of progress was that he continued to stay out of the Junctional Rhythm, continuing to diminish the potential for pacer wires. The goal for the day became to remove as many lines as possible to see if he could move from the ICU to the "Floor" - a great sign of progression.

Later that morning they removed one of his blood pressure lines that do directly into his heart. Removing the line could result in a wide range of bleeding, but once again Declan was a champ and the bleeding was easily controlled with pressure and a bandaid. So through the rest of the day, the other line was removed and they also fell the "hole" in the tunnel was still open - more positives. They felt great about his progress and moved him to the "floor" late afternoon. We couldn't be happier, most don't move for a few days or longer due to junctional rhythm, or chest drainage. But so far things are moving according to plan.

Tomorrow's goal will be to see if we can get him moving around a bit.

Fontan Update

12:00 Noon - or so. The nurse in charge of updating us found us in our waiting room and greeted us with a smile. (Always a good sign.) She informed us that Declan was off of bypass and the were working on getting him ready to take him up to the ICU. We were thrilled. She said they were able to get him off bypass quicker than they thought and he had done well.  That was definitely a call for more smiles and happy tears!

A short time later our surgeon came and gave us an update and summary. He said the construction of the "lateral tunnel" went well. No real issues. As we knew would be the case from the catheter procedure, there was indeed some "junctional" heart rhythm, so they had to pace his heart with an external "pacer" (like a pace maker) to ensure the signals telling when the heart to beat had the correct timing/sequence.  They say this is common with this procedure because the spot on the heart that initiates the electrical impulses is often "irritated" with the nearby grafting of the tunnel. But since he has a bit of history of a juctional rhythm, they have to watch it more closely to see if they need to put permanent pacer wires in for a potential future pace-maker. But just a "wait and see" for now. They also think the "hole" they put in the tunnel as a "pressure relief" may have closed, which "may or may not be worrisome" - another wait and see. If it is indeed closed they may have to go in later to open it back up but leaning more towards a "no" for now. Just have to see how his body responds.

Most of those potential "unknowns" we knew about going into it and expected so we were thrilled at the update. So after a few additional hours in the waiting room we were allowed into the ICU. This was the other part I was dreading - what would he look like. After his first two heart surgeries, his initial appearance left us a tearful wreck. But we were pleasantly surprised today that he looked relatively close to our cute little Declan we love so much. Not nearly as puffed up from fluids and very much recognizable. We spent hours talking to nurses and doctors, peppering each new victim with questions as they would enter the room for their evaluations.

The plan is hopefully tonight to wean him off the oxygen and pull out the breathing tube to see how he breaths on his own. But thanks again for all the thoughts and prayers. And all Declan's supporters wearing red (or mostly red) - we love it! It is so much fun to see everybody supporting him - THANK YOU!!!!

Fontan is Underway!

Arrived here at the hospital at 6:00am to check in. We wondered how Declan would react to being back in the hospital after our last stay but didn't seem to mind. In the pre-surgery room, Declan was completely distracted by a "farmer" toy play set. He didn't even complain about the blood pressure cuff. But then, as they gave him the pre-anesthesia medicine it became real. As Declan started to get loopy we forced him to give us as many kisses and "I love you's" as we could before he completely zoned out.  I tried to stop thinking on what was going to happen and focus on something, anything.  Don't cry, don't cry, don't cry, I told myself. But I couldn't, I held it back as long as I could and then I felt like one of those scenes in a documentary about the Hover Dam when they first open the spickets and the water begins rushing out. I couldn't even look at the nurse as she continued to give us information. Then the wheeled him off and we closed the curtains of our waiting area so Tammy and I and Mor Mor and Pop Pop shed a few tears together..

09:30 - Just received an update and they just made the first incision. (Just takes lots of time to get all of his IV lines in and prepped.) So we will will get an update next when he goes on bypass.

Thanks everybody for wearing red today in support of Declan's surgery. We've already seen so many posts and comments by friends and family. Tammy thought it would be a great way for people to show support, who want to do something, but not sure what they could do to help. We will compile them together for Declan so he can see all the people who were thinking about him and praying for him. Thanks! Keep them coming with #heartofdeclan. They are meaning a lot to us today.

BUMPED !!!!

Sorry for not posting this sooner, been very crazy the last few hours but Declan's Fontan surgery was bumped. Declan was discharged about noon or so yesterday and we had our instructions to return the following morning (today) at 7am for surgery prep. We decided to get a bite to eat together, and about two hours later we received a call informing us that some emergency cases had come up and we were getting bumped. We were beside ourselves, we had been mentally prepared for what was going to happen. Family and friends had gone out of their way to help, and Tammy had put a tremendous amount of energy and effort to put all the pieces together so our family could run smoothly while we were gone. Then to suddenly have it pulled out from underneath us was awful. We were frustrated, angry, and disappointed to say the least. So the new plan is to have surgery on Monday May 8th. We will keep everybody posted. Thanks for all your love and prayers!

Trucks, Jeeps, and Hospitals

Sunday morning I woke up at about 1:30 and just lay in bed, trying to fall back asleep, knowing I had just 2 hours of precious sleep left until waking up at 3:45 am to get ready in time to catch a plane.  Declan had taken his usual position next to me, nuzzling in his head against mine and I could hear and feel his breathing, always needing body contact. As I felt him next to me I reflected on contrast of the last few days to the days lurking ahead.  We had spend the last 4 day as a last ditch effort on a relaxing family vacation before the ensuing chaos surrounding his Fontan surgery on the 26th. We had crammed a lot into a few days. I felt like Declan's toy truck. He didn't have any people to stuff inside, so used the next  best thing: lemon pieces, and other vegetable surprises. But he stuffed it!

Tammy and I had wondered if we had crammed too much in the last few days. We had just driven up to Boston on Tuesday for a presurgery workup, back to Connecticut, then woke up at the crack of dawn Wednesday to drive to New York to catch our plane to Florida.  But the Florida decision had been a good one. We spent 4 days lounging around and playing in the beach and pool. Declan and his sisters had a terrific time with their family and cousins. Despite the timing of it being close to his surgery, the break was needed and it provided a great opportunity to spend some much-needed family time. One of Declan's favorite moments was being crowned with a balloon hat, complete with orange Jeep. 

Fast forward to today, Declan had his Catheter in preparation of his Fontan Surgery. The primary purpose is to ensure the lungs have correct pressure, since post-surgery he will only have passive blood flow back to the lungs - no heart pumping the de-oxygenated blood. (The heart will only be used to pump oxygenated blood at that point.) So the lungs cannot have too much resistance, otherwise, the surgery wouldn't work. We arrived at the hospital this morning at 6:20 - checked in and raced hotwheels around the waiting room until his name was called. Tammy and I watched as he was injected with meds. At that point I began tearing up, thinking - here we go again. And I knew there wasn't much risk with a "Cath" but it was the memories of surgeries past, and the upcoming Fontan that triggered the emotions. But it was cute seeing him get smiley and groggy.  (The photo below is a pre-med smile)

About 3 hours later the Doctor gave us the lowdown. The procedure went well. Lung pressures were good. They did notice some narrowing around one of the connections that was done during his Glenn surgery so they will try to open that up a bit when they go in for the Fontan surgery on Wednesday. The anatomy and blood flow looked good for him. Also, the electrical pulses from his sinus node sometimes varied a bit but they think it may have been the anesthesia, but it will be something we will have to watch.  They also closed off some collateral arteries that had grown-but typical for HLHS kids. 

Declan spent the next 6 hours after the procedure on his back. (A requirement to prevent blood clotting.) He was still out for the first couple hours so it wasn't too difficult. But the last 3 hours he was not so happy.  But thanks to Mickey, Blues Clues, Backyardigans, and Tumble Leaf, we made it. The night was capped off with an x-ray, blood draw and now we will try to get him to sleep.

Tomorrow we'll get one evening back at our shared family housing. Now the decision of who sleeps bedside with Declan tonight. . .  

So Much To Catch Up On

I'm long overdue for an entry here. So much time has passed and Declan has grown so much since the last post. He is our special little guy, but definitely all BOY.  His favorite pastimes include breaking small twigs, picking up and examining live ants, and digging through the mulch in the flowerbeds. Oh, and if there is a button to push (phone/remote/etc) he will push it!. If the Kindle is left unattended for any period of time, he grabs it and starts swiping and tapping with such remarkable speed that somehow  the settings are altered to zoom in the screen and activate voice reader. I don't know how he does it but it takes 10x the amount of time to fix the settings. He is such a happy little guy- with en ever present smile that can lighten anyone's load.

Declan also loves to be "helpful". Vacuuming is particularly fun around him. He loves "cords" so you might be vacuuming and think you have reached the end of the cord, but when you turn around to look for a closer plug, you find that Declan pulling on the other end of the cord with a big smile on his face. He also loves to follow you around while you vacuum. (A far cry from Acadia's toddler years when she would emit torture-like screams if she heard the vacuum event turn on!) Another household-chore favorite of Declan is doing the dishes. Okay, he does't actually load the dishwasher but he loves to "sit in his spot" and smile at you while you load it.

As far as his health goes, his heart has been performing as expected, given his surgeries. During each of the last few cardiologist visits, (we are now quarterly) he EKG, and "echo's" have looked good. His Glenn has been functioning as hoped. At the last visit, they let us know that they would plan for his Fontan spring of 2018.  However, we just found out that the Dr that performed his Norwood and Glenn surgeries has left Yale and is practicing in North Carolina.  That puts us in a bit of a pickle. No other hospitals in CT can perform the Fontan, so that leaves us with Boston, Philly, or NY. So we have to address that. Our biggest challenge is still feeding. He was allowing us to give him a little food, but then he got the stomach flu and lost a lot of weight. We have been working with dietitians, GI doctors, and feeding therapists to get his weight back up. He's close now to the "50th percentile" but feeding is quite a chor. We have to "bribe" him for almost every bite and feeding him a yogurt can take an hour or two over one or two sittings. He still "pockets" food that needs chewing, and now they want to do a swallowing study. But luckily he still has the good 'ole feeding tube (which acutely came in handy this spring when had that stomach bug).

Tammy and I continue to be grateful for every moment with him. A few months ago we learned of two other families that had children with HLHS. Unfortunately, only of of them made it past the first surgery. We are thankful for each moment and cherish every hug and smile he gives us. Declan is such a blessing in our life.

We're Back!

This morning I watched the windshield wipers push away the cold dark rain; but instead of clarity, all I could see were the many memories of this drive to the Yale Hospital - which, like this one, so often took place in the dark. We are at it again - another surgery for Declan. But this surgery is not nearly as intense as what he has been through in the past. Declan is having his tongue operated on because he is a very "tongue-tied". Normally this procedure is done in the doctor office, but due to his age they do an outpatient procedure here at the Hospital.

A couple of weeks ago, one of Declan's therapist suggested we visit a specialist to determine if anything needed to be done. She could see that if he had a piece of food in the side of his mouth by his cheek he couldn't get to it with his tongue. The ENT immediately confirmed that it was indeed tight and without hesitation recommended Declan have the procedure. So two weeks later and after an early morning trek to the hospital here we sit in the all too familiar surgery waiting room.



With Declan's birthday this coming Saturday the 14th, it's amazing to think about what he has been through this year - four operations intermixed with countless small obstacles and hurdles. But he has been such a fighter. I can only hope to have as much strength as I have watched from Declan. His obstacles have ranged from intense reconstructive heart surgeries and seizures down to such simple tasks as learning to eat. Our own emotions have had a similar range from fright and despair to hope and elation.

I think that the past two weeks have been some of the most joyful. Declan has taken some huge strides of improvement. He has actually began to show some interest in eating! He still refuses a bottle but he has been more willing to eat purified baby food in small doses and has also shown interest in nibbling on bread crumbs and those delicious looking baby puffs! Although he has just his two bottom front teeth, he uses them often, especially when he takes his hands and puts them on your cheeks and pulls your face close to his and tries to kiss/bite your nose or cheeks.

He also started crawling this week - YES!. The therapists were very excited. We love to watch his thoughtful crawl - watching his mind determine which toy is the shortest distance and pulling his little legs one and sometimes two at a time. It is such a miracle to watch our little guy move into the "normal" baby stages and enjoy his little personality.

We are now at home after a successful surgery. He has been crying a bit, but overall the doctor was pleased. Declan is still deciding what to do with the extra mobility in his tongue. His tongue and mouth movements  remind me of the feeling after you've returned from a Novocaine-filled dentist visit. Your tongue slops around in your mouth and you feel like you are drooling. The Doc said we can try food again soon and look forward to Declan's reaction. Thanks to all for your thoughts and prayers and to those out there who have similar Congenital Heart Defects: know that there is light at the end of the tunnel. And although it sometimes seems to never get closer it does.  It gets closer with very small steps but it does get closer.